Have you ever wanted to advocate for yourself or a loved one against a bureaucracy but felt the futility of the fight? Today I have a good news example of one mom who went to bat for her daughter and ended up changing the landscape of healthy nutrition across Canada.

Because of that mom I have the opportunity to share a unique plant based advocacy story. Maybe I shouldn’t say “plant based” because this is much more than that, it’s a health advocacy story. Holly, whom I originally met 16 years ago in prenatal classes when my wife and I were expecting our baby, is a single mom raising a daughter with some significant health issues. Emily has Down’s Syndrome, but uniquely to her she also relies on tube feeding for her nutritional needs. Holly, herself plant based since 1995, decided that she could no longer accept that the one food approved by Health Canada for her daughter contained animal products, tons of sugar and processed oils. Health Canada’s approach was that any formula fed must be able to withstand room temperature without spoiling (it's called hang time) during feeding times and contain whey or casein protein (I’m going to assume since it’s fast absorbing and has been studied for absorbability) in the ingredients. For Holly, this presented a personal conflict on ethics around animal foods and one for health with the ingredients of the approved formula. On the subject of processed sugars alone the standard Nestle product contains more sugar per day than recommended by the very governing health body that approves the product.

So we have a single mom, facing off with doctors, dieticians and the bureaucracy of Health Canada in her mission to get another option available to people relying on tube feeding. This isn’t solely a fight for nutrition and plant based options, it’s one of choice. As Holly so eloquently puts it “choice is change.” With approximately 100,000 people in Canada relying on tube feeding this is a bigger fight than you might think. I’m also very aware that those relying on nutritional supplements who are not tube fed use products like Ensure and Boost which are full of sugar, animal proteins and processed ingredients. Holly told me that when she stopped breastfeeding Emily, her daughter, she became horrified at the notion that every time she fed her daughter she was poisoning her. When we force people that are medically vulnerable to ingest these products (and they are big business products) we are, sacrificing their health and stripping them of the same rights you and I have to choose what we eat. Right now I can go out and make the personal choice to eat a salad, a chocolate bar or a fast food meal. With the ingredients of these approved nutritional supplements we are mandating that our most vulnerable people eat junk food at each and every meal.

Some parents feed their kids food put through a blender into their feeding tube giving them much more control and choice. With Holly's daughter, who can not be bolus fed, that wasn't an option.

In Holly’s words: "I started my hardcore advocating for change November 2015, writing to all levels of government, Health Canada, and started a change.org, petition. I switched Emily “cold turkey” from Nestle to Liquid Hope Mother’s Day 2016. It was a gift to me and of great significance. She has been on it ever since. Of course my dissatisfaction and concern over her formula was years leading up to it but I felt stuck and had to get to a point that I felt strong enough in my fight to go to battle.”

Holly’s mission has been to open the eyes of politicians, doctors and dieticians as well as her community about the issues of choice and access to options for the food choices of marginalized people. To their credit, our local provincial MLA and federal MP were huge advocates for the needed change. After Holly’s efforts a new product imported from the USA was approved by Health Canada for use. This was a product by Functional Formularies with their nutritional formula “Liquid Hope.” It was approved by Health Canada on July 17th, 2017 so if you know someone that relies on tube feeding you can let them know they now have a nutritional option other than the Nestle product with contains 5 different types of sugar, processed oils and whey/casein (milk). South of the border Liquid Hope is in wide use and encouraged by private health companies. Liquid Hope is slightly more expensive than the Nestle product which makes sense based on the quality of ingredients. Interestingly because Nestle had the market cornered they could charge whatever they wanted despite poor ingredients. ​This might be a good time to take a minor side step into Holly’s daughters personal nutrition. On Nestle she had been losing weight, about 5kg (8 pounds) and blood tests revealed that her levels of iron, selenium, magnesium and vitamin D were low. Her health care providers agreed to a three month trial of Liquid Hope where they would test her blood work at the beginning and end. Upon switching to Liquid Hope she gained back 1kg and all of her blood levels returned to normal. Her family doctor and dietician are both now on side with the new food and wrote letters of support for the Liquid Hope product approval. Dieticians for better or worse in Canada are bound through licensing to the Canada Food Guide (which is thankfully being updated) and products approved by Health Canada. I’m certain that they would all personally prefer the Liquid Hope product. Liquid Hope has now been temporarily approved. The fight for food choices is not over so if you know somebody let them know they have options (they must ask their dietician) and make a point of keeping your politicians honest about giving choices to people that are vulnerable.

*IMPORTANT: Nothing in this post is intended to be health advice, it is a strictly editorial opinion. It's important to work with your doctor and/or dietician when making health choices for yourself or loved one. My intention is simply to let you know you have choices (thanks to Holly) and I'd encourage you to have an open conversation with your health care team.

A special thank-you to Holly. You are truly a super hero in my mind. Through your efforts thousands of people have an actual choice in what food they eat. Thank you!!!

I have both the honour and pleasure of knowing Holly,she truly is a special lady an a dedicated advocate for her daughter's health
and well being.She wanted change ..she is the change !!!
Thank you Holly,you not only have made a difference for Emily but countless other people living in Canada with dietary needs.

Reply

Debrah McCabe

24/10/2017 11:49:51 pm

Such an amazing hero! Not only for your daughter, but to 'plant-based' families everywhere! Thank you from all of us.

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Christiane Kamerman

26/10/2017 08:30:27 am

Holly is an amazing mother. As parents we need to be the voice for our children until they get to a point or age that they can stand up for themselves. I watched Holly as she fought for this diet change and the walls that she climbed every time one was placed in front of her. She is so strong and such a good role model for mothers everywhere. I am so proud to call her a friend. Great job Holly!

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Lisa

1/11/2017 07:02:06 am

Better than doesn't mean great. The fat and salt level in the better formula are too high.

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Holly

2/11/2017 02:08:31 pm

As Neil states in his post. This is not specific health advice, and so maybe for your specific dietary requirements the fat and sodium are too high as everyone is unique and has varying needs, but this has met my daughters needs and the needs of many others, who are followed by health care profesionals to monitor micronutrients to be certain things are not too high or low.

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Neil

2/11/2017 02:26:54 pm

It's interesting you say this, I've been meaning to address fat soon on the site. But as much as I'm not a fan of ketogenic diets, I do think they help us get over our fat fear. Fat derived from whole foods is essential to human health, in particular our nervous system. There is no need to fear it or any particular macronutrient. People get much too obsessed with increasing or decreasing macronutrients and should instead focus on eating foods as close to whole as possible. This formula is a huge step forward from the Nestle one. Oils, trans fats and saturated fats should of course be limited as well as animal fats. I have little issue with the fat content of this formula. As for the sodium, children should stay under 2300 mg per day (upper limit) so with this formula anything under 6 packets is under the recommended amount per day. Less is better of course, but remember that we do get iodine from sodium and someone tube fed exclusively would have much less sodium than other people eating packaged foods. Also we can assume that hypertension isn't likely an issue for a child.

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Sandra Cleveland

14/11/2017 10:55:02 am

Our daughter Sara Bishop in Nanaimo, was in touch with Holly wanting to know more for her dad Dale ( my husband). He has just had to be put on abdomen tube feeding . Previously have been vegetarian and vegan, so very interested in going into the plant base food. In the past months before the tube feeding, he tried boost and ensure but neither of them made a difference in energy or weight gain. We are approaching the dietician in the hospital with this info from you article. Thanks for all this .

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Margo Linder

10/1/2019 08:09:31 pm

I found FunctionalFormularies last May, when my husband was on total tube support in ICU and CVU, etc at Royal Jubilee Hospital in Victoria after a near death aortic dissection. I won't go into the whole story, but he's much better now, and I have some Nourish and Liquid Hope to gift to someone who needs it. I have 45 Liquid Hope, and 13 Nourish. My doctor said she'd find someone, but then didn't, so hopefully this post will work. The BestBy dates are in November and December of 2019.

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Sally Gilbert

5/2/2019 12:24:16 pm

Hi Margo, I’m Sally, a dietitian in Victoria. I can definitely pass along your Liquid Hope & Nourish to families in need if you still have it. If so, please let me know. If you found a home for it otherwise, I’m happy about that too. Thanks